NHS England publishes Long Term Plan (7 January 2019)

NHS England has unveiled its Long Term Plan today, which includes commitments that could help to tackle inequality and improve health and care services for autistic people across the country.

The proposals are promising and recognise the urgent need to address the barriers that autistic people face in trying to get help from all parts of the NHS in England. But this is just a start and further detail is needed.

You can download the full Plan on the NHS England website. The autism section is on pages 52 and 53.

Background

When it was first announced that the plan would be developed, our charity was delighted to see that autism was being included, alongside learning disability, as a clinical priority. We hoped that this would mean the NHS tackles important and under-recognised issues, including:

people waiting many months and even years for an autism diagnosis

poor support for autistic people’s mental health

insufficient understanding of what it means to be autistic and how to adapt care across the NHS

Over the summer, we and other organisations and campaigners encouraged autistic people and families to share their thoughts and experiences with NHS England, including in two face-to-face sessions we organised. Together, we put together the evidence that we believed NHS England needed to make some fundamental changes.

What the Long Term Plan says

The Plan details how the NHS plans to evolve in the next ten years, including a welcome focus on improving mental health teams for autistic children and adults. This will benefit many autistic people who struggle with mental health problems, like depression and anxiety. And, it will help to address the scandal of autistic people getting stuck in inpatient mental health hospitals. The Plan includes a pledge to reduce the number of autistic people in these hospitals.

But much more is needed to make this happen and to safeguard the interests of autistic people with mental health problems, including an overhaul of current funding arrangements. We will continue campaigning to make sure that autistic people get the support they need. The Government also has a big role to play in achieving this. Producinga review of the way the Mental Health Act is used for autistic people should be made a top priority.

The Long Term Plan also recognises the autism diagnosis crisis and states the NHS’ intention to reduce waiting times. There’s very little detail about how they plan to achieve this at the moment but we’re expecting, and will be calling for, more information in the coming weeks and months. Every area must be held to account for bringing down diagnosis waiting times and we will carry on campaigning to achieve this.

The Long Term Plan also focuses on helping autistic people to stay healthy and there is a welcome pledge to pilot a specific health check for autistic people. This could really help address health inequality, particularly alongside efforts to increase understanding of autism and make sure health care providers are making reasonable adjustments. We hope to see regular health checks rolled out more widely, once the pilot is completed.

We are disappointed that NHS England hasn’t taken the opportunity to improve GP recording of autism, as recommended by NICE following our campaigning. This is essential in combatting the completely unacceptable health inequalities that autistic people continue to face. There are other actions in the plan that will help, but improving GP recording of autism would make the biggest difference.

In summary, today’s plan is a good start. But it is very much a first step. In particular, it needs a dedicated autism team within NHS England to provide leadership and drive progress – something that our charity has been calling for over a number of years.

There will be more detail about the NHS England Long Term Plan in the coming weeks and months and we will keep you updated.

Commentary

Mark Lever, Chief Executive of the National Autistic Society, said: "The NHS plan is a once in a generation opportunity to finally address the unacceptable health inequality faced by autistic people in England.

"Research suggests on average autistic people have much worse physical and mental health than the general public – and may even be at greater risk of dying early. And we hear every day of autistic people who are waiting many months, even years for a diagnosis and support, just because of the poor or overstretched services where they live. Sometimes they can’t get any support at all. This can be devastating, leaving autistic people and their families to fall into crisis and isolation.

“We hope that by making autism a clinical priority and promising to drive down diagnosis waiting times, to pilot annual health checks and improve support for physical and mental health problems, NHS England is recognising the scale of the appalling situation. But they must also be ready to put in the funds needed to make it right.

If NHS England and the Government really focus on autism, and work with autistic people and families, they could transform hundreds of thousands of lives.

Emily Swiatek, 31, is autistic and lives in Liverpool. Like many autistic people, particularly autistic women, she wasn't diagnosed until late into her 20s.

Emily said: "It’s crucial that staff across the NHS build a deeper understanding of autism, so we are given the support and acceptance we need when we access medical care. As part of that understanding, staff need to know that many autistic people don't fit the stereotype - I’m not a man, I’m not shy and I’m not a child.

"I saw first-hand how much of a difference a little understanding of autism can make when I was admitted to hospital with a suspected stroke last year. I was really struggling at first – the smell, the sound, the brightness of the lights of the hospital ward combined with a lack of sleep pushed me to a meltdown.

With no quick answers about what was wrong with me, it all became too much.

“But this all changed when a brilliant healthcare assistant sat with me, and calmly asked about what I needed and how my autism impacted me. She quickly helped other members of staff understand why I might react differently in certain situations and adapt my care to meet my needs. It transformed my experience and I have no doubt it quickened my recovery.

"Looking back over years of navigating the medical system, I can see that it would have been so much easier if I’d got my diagnosis earlier - at school, at work, in every part of my life. It's really positive that NHS England has made autism a clinical priority. I hope this will finally bring down diagnosis waiting times as well as lead to more and better support for autistic people across the NHS."